Why we founded Parents In Needby Chief Executive, Catherine Bailey
Today I saw a man collecting for a charity that supports autism was wearing a jacket with the words “Until we understand” which is what I think we are all looking to do. Although I am by profession a Television and film producer, I am here today to share my experience with you as a parent of a child with autism, and as a founder of a charity, Parents in Need.
When my son, Jamie, was born, like all parents, we dreamed of the successful life and career he would enjoy.
But then our lives changed forever in a way that no family can ever prepare for.
“Special Needs”. The diagnosis of Special Needs is an umbrella beneath which, a staggering array of diagnoses are squeezed.
Following diagnosis parents are immediately hurled into an unknown world of confusing contradictions, bureaucracy and loneliness. Suddenly they have to make sure that their child receives the help, therapy, schooling, and inclusion they need and deserve. They are expected to search for appropriate care; seek acceptance in the extended family, school and community; plan for an uncertain future and, most difficult of all, adjust their own expectations.
The other day I saw a man collecting for a charity that supports autism wearing a jacket with the words “Until we understand” which is what I think we are all looking to do. The term Special Needs is an umbrella beneath which, a staggering array of diagnoses are squeezed. Following a diagnosis parents are immediately hurled into an unknown world of confusing contradictions, bureaucracy and loneliness. Their lives are suddenly changed in a way that no family can ever be prepared for. Suddenly they have to make sure that their child receives the help, therapy, schooling and inclusion they need and deserve. Parents are expected to search for appropriate care; seek acceptance in the extended family, school and community; plan for an uncertain future and, most difficult of all, adjust their own expectations.
You give birth to a child who seems perfect in every way and then gradually you begin to realize that something is different. Friends and family tell you not to worry, that babies develop at different rates and you want so much to believe them. To believe that it cannot happen to you but deep down you know it can. You know and dread the truth. You start comparing with other children. Your child is not meeting the ‘milestones’ and you worry. You see your friends pretending not to see, reassuring you that your child ‘will catch up’. So you start pretending too. Pretending that everything is fine because you will do anything rather than face the facts.
But then then you get the diagnosis and you plunge into a dark pit of loneliness and despair. You mourn for the child you thought you’d had. You reach a point where you want to tell friends and family, but they don’t really get it. And a part of you doesn’t want them to “get it” because you don’t want their pity. Relationships often break up. Siblings suffer. The effect on the whole family can be devastating. You are left wondering what on earth to do next. It cannot be underestimated how stressful, isolating and baffling this time can be.
You do some research. Grasping at websites and books – not really wanting to read them because you are forever hoping that the diagnosis is wrong and that it will all go away. But it doesn’t. At first you cannot believe that you may have to fight for your child’s future, to search for the right education provision for them. You may have to look at schools that are miles away. You go to meetings full of angry parents who tell you that you will have to go into battle. Surely not, you have done nothing wrong, you just want the best for your child and you are a reasonable person.
But before you know it you are in a fight you didn’t begin nor ever imagined yourself being in. And you don’t know who to turn to or where to start. You are watching your child becoming bewildered and frustrated in their need to communicate, but you cannot talk to them about it. They are somewhere else, on a different pathway, on a different planet.
So you pull yourself together and rationalise: Surely there must be a higher authority who will help and listen?
But no, the decision taken on the future of your child is made by someone who is paid by you as a taxpayer, someone who has little or no idea of what it is like living with a child with special needs who has never met your child. Someone who is more influenced by cost cutting and bureaucracy than caring and understanding. That person decides that your child is going to go to the local mainstream school even though, you already know that won’t work and will only increase their isolation and yours.
So you dig in and take the battle further. You are told in order to apply to a specialist school you will need independent assessments; reports from an Educational Psychologist; a Speech and Language Therapist and an Occupational Therapist – oh, and you will need a lawyer as well…
It is hard enough when dealing with a child on a daily basis, on any level, but the invisibly disabled are often misunderstood. Tantrums and meltdowns especially in public are seen as the parents not controlling their child. The child’s frustration and fear is often perceived as bad behaviour. Parents are misjudged by other parents who tut and turn away, which leaves you feeling isolated and somehow a failure. But it is not because your child won’t join in, it is because he or she simply cannot. Their brain is sending too many anxiety signals to be able to cope with the situation. So you and your family end up staying at home or going to the same place repeatedly where your child feels safe but putting the brakes on family life.
This is my story as a parent but for many of you it will be familiar.
HOWEVER, it doesn’t have to be a tale of despair. Given the right opportunities your child can blossom and grow into a valuable member of society.
We searched for the appropriate school for our son. We found the right fit, which meant selling our house and moving to the other side of London. We never questioned the move it was a no-brainer to get him into the right school. The main hurdle was the independent assessments we needed to go to tribunal that were very costly. Later when parents asked me for advice I could never bring myself to ask them “how much money do you have? Because you are going to need money and support if your side of the story is going to be listened to”. Of course it is wrong that the system works in this way and even does not make any sense from an economic point of view. For a Local Authority to block therapies and a specialist education for children may help their next year’s budget but in the long term the longer their needs are ignored the more likely they are to end up in residential care, which incidentally, can cost anything between £300,000 and £700,000 per year. A false economy if ever there was one. Early intervention for children with special needs is crucial and no child, whatever their background, should ever be denied the help and support that they require. And no parent should feel alone when confronting these issues.
I resolved that if and when we came through this dark time we would make sure that there would be more support for parents in similar circumstances. This is why we set up the charity Parents In Need to provide guidance as well as financial support to families with children with Special Needs. We at PIN are looking at the long term future and potential of these children and young adults, not just at next year’s budgets. If strategies are not put in place families are seriously at risk and our mission is to minimise those risks by giving the support that yours and families like yours so richly deserve.